7 Months later

March 12th, 2014

Had the first follow up with the child development specialist for Gabe’s autism this week. It had been more than 7 months since he was diagnosed and since then we have enrolled him into programs that were recommended by the doctor. Firstly he is regularly attending speech therapy, followed by twice a month occupational therapy. We also sent him to a Montessori nursery that has a small class. He is also signed up for early intervention every Monday. As you can see, our schedules revolve around Gabe and he is like a secondary school kid attending tuition!

But we are happy after the assessment that he has almost caught up with his age. There were a few components that the doctors tested him on. I could not remember all of them but he excelled beyond his age in visual and cognition – apparently this is one of the trait of ASD kids. But his speech and social interaction skills still lack behind by at least a year.

Of all the improvements, we can see that his speech has improved a lot since 7 months ago. When he was brought to the doctors, we can say that he was non-verbal, choosing to just point and say Eh.. Eh.. Now he can try to string a sentence and ask for things. This is an improvement that we see very clearly, although compared to his other classmates, he has a long way to go.

I am blessed with the understanding teachers in the kindy. We did not tell them that he has ASD but we told them about his quirkyness. They reassured us that they had many kinds of people coming through the nursery and Gabe would not be a problem. They are truly patient and celebrates all his small victories.

I did tell the doctor yesterday that we have very good thereapist and teachers, but doctor said that it also a lot to do with the parents that is willing to spend time with Gabe. Hearing what she said, I did reflect on the effort that we put in for him to make sure that he does not miss any of his therapy.

We are also happy when he suddenly liked to play in the sand. Ask me 6 months ago and Gabe would be like oil to water when he is near the beach. He will never evern touch sand. Out of a sudden, he followed his cousins and went to play sand with them one day. Amazing.

He still has a long way to go. As far as his intelligence go, he looks good. Doctor said they used to call people like him “high functioning autism”, but now they just call is ASD and get the treatment that they need. Earlier the better.

I do hope this is the beginning of great things to come, there is still a risk of regression so both of us as parents are edgy.

Well, since he was diagnosed, wife has quit her job mainly because of the need to fetch gabe for his therapies but also because her job has become more stressful. We also finally moved into our new place to the south of the island so that there is more space for gabe to monkey around. All said and done, the journey is far but it is he small things that keep us going. We do join in conversation with overachiever parents and we only aim to get into national school and not special ed. When you have a different goal, view of life is really different.

 

Dilemma

August 18th, 2013

I have been telling key people about Gabe’s autism diagnosis. These are the people that have the need to know, they are friends, family and people at work. A recurring theme after they are told, is always to ask if I already have a second opinion. It is an question I find hard to answer and the reason is simple. At least in the system in Malaysia, there are multiple people that you have see once suspected of autism. Your first call would be, hopefully, a pediatrician. Once she is convinced, in my case after running a M-CHAT test, she referred us to the pediatric psychologist. The child psychologist has the final say in whether the child is autistic. Then we are also referred to the audiologist, ENT, ophthalmologist and the occupational therapist. These other specialist will check if Gabe has other issues, that may look like he has autism.

So maybe I could get another child psychologist and see second opinion? Hold that thought for a while.

This is where the dilemma starts. By seeking a second opinion – remember that we already went through a barrage of specialist – what are we looking for? consolation that Gabe is fine. Maybe he is, looking at how good he is at angry birds. Besides he is just 3 and there is no way doctors can determine for certain that he has autism. Well what if second opinion (that says he is fine)  is wrong 2 years down the road and he does have autism. Then we have wasted good 2 years that can be used to intervene.

Another recurring theme about autism rehabilitation is to start early, that is what we are being told again and again by various people. So even if Gabe does not have autism, it is good to start early since the early intervention and therapy does not harm normal growth. Starting earlier means the child has more time in the rehabilitation and therapy. I come to understand the aim is to get the child into a normal stream school. So as the child nears schooling age, the therapy stress would be different. So if they start early, they really have a head start.

My quick summary  based on the process that we have been through so far – once you suspect the child of slow development get him checked out. Some doctors can recommend therapy as early as one year old based on eye contact. I don’t think second opinion really matters – are we trying to rehabilitate the child or making the parents feel better. Lastly, start early so that you do not waste precious formative years for the child to go through therapy. The stress is different when the child nears schooling age and still cannot communicate and socialize.

Writing as a therapy – again

July 18th, 2013

Life has been going on cruise control for the past many months. Other than work related stories, which unfortunately I could not share publicly, especially in writing, life has been pretty uneventful. There were some setbacks with the extended family, but generally everything has been going smoothly.

You know what they say about the calm before the storm!

Gabe reached 3 this last month and was brought to the regular checkup at the government clinic. We use the government facilities out of principle (since I technically paid for it) and not because I was a cheapskate. Part of the checkup, we had to go through the development checklist with the nurse. This is the checklist that asks if your child can perform tasks on par with his age. Gabe missed half his milestone in this checkup, which was not too much of a concern but the nurse asked that we come back for another visit in 6 months instead of a year. Otherwise, Gabe is given a clean bill of health.

But we can see the concerned look of the nurse during the visit. We also compared Gabe to other kids of his age and younger, especially one of his good friends in babysitter’s place. The kid who is one year younger can speak and express himself but Gabe still points. I guess that is the straw that broke the camel’s back so we got an express appointment with the pediatrician. By then, I had to attend business meetings in the US, so the wife had to bring the kid to see the doctor. Our concerns – autism. Paranoid parents, you say.

Pediatrician ran an M-CHAT assessment. It is a questionnaire for the parents to determine autism (which you can take online). Wife called me after the test and Gabe failed. She was a bit devastated but inside me, I was kinda expecting this result.

Right after that, things went into a frenzy as he has to get further specialist assessments such as the pediatric psychologist (didn’t know one exist), ENT, Occupational Therapist and Audiologist.

Of all the specialist, the pediatric psychologist have the final say. He will be the one to finally determine the state of the child when it comes to autism. I was still in the US when the appointment with the child psychologist took place and Gabe is in the borderline between normal and ASD. That sounds bad, but I guess manageable.

When all said and done, we are told to be prepared to sacrifice more time for this child as he needs the help and attention. We are welcomed into the world of autism rehabilitation (if I could use that word). We were told that regardless of his development status (whether he has autism), the speed we get into the next steps are crucial. If he is normal, then it will speed things up for him. We were told to get in touch with various organisations with the referral letter by the child psychologist so that we can get the necessary help and education. Generally these are the things that we need to do

  1. Start Occupational Therapy
  2. Start Early intervention
  3. Start Speech Therapy
  4. Get him out of babysitter and into a normal kindy with small classrooms.

It is going to take a lot of our time to arrange for these “classes” and we are clueless on what we need to do at home. I think that is the most important question from us because we spend a lot of time with him at home and there has to be something that we can do.

But all said and done, what is important is the acceptance vs denial. Looking at Gabe and comparing him to other kids, he is weird. When I tell people that he has autism and weird, other older folks say to give him time and he is just slow. Sometimes kids just need time to start talking, they say. I think they are right when just referring to speech. I somehow see things that Gabe does, which seems weird like his obsession with spinning wheels and fans. His lack of eye contact and affection. He does not respond to his name. I sum it up by saying that he seems to live in his own world. I guess the parents are more accepting than other people, which is normally the other way around – so this should be a good start.

It is a new world we are entering.

By the way, the child psychologist immediately gave us the registration form with the welfare department so that he gets the “special privileges” card. Hopefully this helps to offset some of the cost of rehabilitation since I get some tax deduction.

Sending ourselves back to the stoneage

January 11th, 2013

Since having Gabriel, I always look at the technological advancements that he has right now compared to when I was growing up. Gone are the empty carton boxes to entertain children. These days, every kid in town has some sort of a touchscreen tablet to occupy their time.

It is sad then to know that there are some people who still thinks that the stone age is the way to go. So I was almost in tears (sometimes I can be emotional too) when I read the words on the cover of Time magazine.

“One thing that stands in the way of wiping out the (polio) virus for good: The Taliban”

 

It is really sad. Back in the “old days”, people do not understand how disease spread or how to prevent them, let alone cure diseases. Plagues was attributed to act of angry gods. Now we know  better.

Mankind already killed off smallpox. We are so close to sending polio to the way of smallpox. Kids, will have a better chance of living.

But what I summarize as selfishness to preserve the Taliban’s presence, they caused a lot of kids to be at risk of suffering from polio. We are almost there to rid the word of polio for good, and I feel strongly about that.

Goes without saying, some modern mums who would not immunize their children in fear that it will cause autism or that they believe in au naturel. They are no different from the Taliban and sending us back to the stone age!

80% fixed

January 6th, 2013

After suffering Stenosing for 2 months I finally got it fixed. It is an operation and it is as easy as the doctor said. When I visited him, he did say that it is going to be a minor operation. Just go in, go to sleep and when I wake up, it is fixed. He didn’t tell me that it is going to be inconvenient for one more month because the hand has limited use. Lucky it is my left hand that was operated.

Here it is before the operation. As you can see, I am already stretching out all my fingers but the middle one wont budge. There is no pain, just feels like the limits of the joins. I cannot straighten it anymore even if I force, not that I think is a good thing to do. The only pain is that the tendons feels stretched, like how it is when you bend a join more than it could take.

DSC_9453

The hand is bandaged after the operation. The cut is at the palm, alone one of the natural lines on the hand. And as you can see, I can straighten the finger already. This is a few days after the operation. I only had to stay one night at the hospital, which was lonely more than anything. The finger was fixed straight after the operation, just that the tendons that were operated on felt raw. The doctor has advised that I move the finger, try to straighten and pull it. The operation site was painful more than anything.

DSC_9533 

One of the problems with the operation on the palm is that it always sweats or get wet. I try not to use the left hand but it still gets dirty and needs to be washed. After a few days, the bandage was removed to reveal the stiches. Look away if you are squeamish.

DSC_9539

The wounds are healing well, the finger is almost back to normal. I still cannot bend the finger all the way back without feeling some sensation in the knuckles. Maybe it is because I have not straighten the finger in 2 months, therefore the other joints seized up too.

Almost scolded the wrong person

November 27th, 2012

Woke up over the weekend and saw that I got an email from my MSc program coordinator. That was the email that I have been waiting for more than 6 months. It is a sweet and short email telling me that I have passed the MSc with Distinction. I was overjoyed with that email because I can finally get my MSc.

I contained my joy till the wife woke up and told her the good news. I also told her that although I passed with Distinction, what I actually wanted was Merit, which was of higher marks.

She told me that Distinction was higher than Merit.

Obviously she was right although I did do a quick google.

And to think that I almost sent the statement that I was hoping for  a Merit instead of Distinction to my program coordinator, that would confuse him a lot, not to mention the embarrassment.

Nevertheless, I finally passed and can close this chapter in my life.

Steno what?

November 27th, 2012

Stenosing tenosynovitis – apparently I got it.

About one month ago, I woke up from bed with this stiff middle finger on the left. It curled up and would not straightened. I am sure I can force it to straighten but then I am sure I will be in pain and agony. Being a regular with joint and muscle pain, I decided to leave it alone and see if it goes away. A couple of days later, the finger can straighten again and I did not give it a second thought. After a few days, the ailment came back again, same finger would not straighten.. and just as fast as it came, it went away.

Then one day, it jammed! The finger curled up and would not straighten after a few days. I gave it one week just in case. That one week dragged to 2 weeks and the finger still would not straighten.

A few things came to my mind. Is it gout? Since I have a very high uric acid content? Did I sprain some join when I was sleeping? Is this finger going to straighten again? I told my parents about this finger (since they are in the medical line) and my father straight away say that it is a “trigger finger”. I refused to hear him out because my finger is not “triggering”, it won’t straighten. Too many questions that needs answer.

As stubborn as I am, I know it is the time to see the doctor. The GP referred me to the Orthopedic Specialist and for the first time, I am in a specialist’s clinic.

I had expected a battery of X-Ray to be endured. The specialist hear out my problems and pressed at the correct spot in the palm. Pain? YEAH! It was a quick diagnosis but what happens next is something that I wanted to laugh in his office.

He said, normally Stenosing happens to women about 90% of the time. I told him I had to be the lucky rare 10%. He said that this is a common ailment and 10% is a lot of people.

He said my case is minor since I only have one finger curled, some people come to him after they have 3 curled fingers.  I wondered then should I wait till 3 fingers are curled before I commit to the cure and get a discount.

The solution is for a minor operating to untangle the tendons and the sheath. When would I want to do it, he asked, like maybe a lunch invitation.

He said it is a short operation. “Short?, like half an hour operation?”. I asked

He said less than an hour for him, 3 hours for me…

????

Apparently I will be under GA.

I asked if I can go for LA, unknown to him I have this fear of GA.

He said he would not want me to wiggle around while he is pulling my tendons around. So he assured me that I don’t have to worry too much on what he will be doing because when I wake up, it will be fixed.

Operating is schedule for next week after the in-laws leave for home. In the meantime, the pain and the inability to straighten the finger is ANNOYING more than anything else. Bathing is a chore and sometimes Gabriel grabs my hands accidentally and it hurts.

 

Engineering bashing?

November 8th, 2012

http://www.freemalaysiatoday.com/category/opinion/2012/11/07/incentives-to-promote-science-to-students-dumb/

Everything in Malaysia can be politicized. I tolerate most of the issues but some issues just begs for me to release my pent up anger.

I might not have been that well traveled as the writer – well maybe I am depending on the context. I personally feel that the field of engineering has much potential. It is one of the fields that you do not really need to have any social skills and thrive. I have seen great works of people who sit behind the desk and get products out the door. I have seen eccentric people, who stand out like sore thumbs in society, actually be treated as gods in engineering field because of their vision and insight.

and I have enough of Apple comparison as the “model”. Remember that Steve Jobs have Wozniak as partner. One with the idea and the other with the engineering means to create.

Singapore government is already raising their concerns that they see less engineers taking up leadership role in the country. That country was built with engineers, now the smart students are going for commerce, thinking that they can have a better life.

No offence to people in non-engineering fields. Ultimately, my opinion is that regardless of your job, some people have it good and some people just have horrendous experience. I believe that your passion, talent and opportunity presented in the company has to come together. Put me in marketing and I will fail,  because I do not have talent nor passion.

 

Out for 4 days – in high seas

October 2nd, 2012

Whenever I pass by the pier in Georgetown, I have always gawked in awe at the giant cruise ships that docks there during the day. This is especially true for the StarCruise ship which dwarfs all the ships in the pier and even some of the buildings in the vicinity. It always looks as if the ship is a building by itself, larger than life. I have always wondered and wanted to travel on a cruise. I want to enjoy all the trappings of the high seas cruise but the scrooge in me would not want to pay for the fare.

Luckily, I stumbled upon a buy 1 free 1 offer on Superstar Libra and took up that offer.

The ship was everything I had expected, more than just a large vessel, it has a soul in the form of the staff that worked on the ship. Activities start as soon as you board ship with not much time to work out the cabin. There are activities for all walks of life. In fact, most of the passengers are not shy about joining in the activities, as if what happens on the ship, stays on the ship.

Goes without saying, we are well fed.

The only drawback of a large ship is the many colourful characters that boards the ship. A fight almost occur between 2 families during mealtime because of queuing policy. So bad that the familes are asked to sit at separate corners of the restaurant and the ship’s officer has to come down and attend to the problem. I guess in a crowded environment, patience and manners are thrown overboard.

Cabin was reasonable for 2 adults and 1 toddler who has to sleep on the floor because he may roll off the bed. The bathroom is small but sufficient.

We were expecting some rolling when the ship is moving, preparing various methods to counter seasickness. Since our cabin is almost at the water line, we do not feel the movement as much as the higher floors.

Playing in my head now

September 24th, 2012

Guide Me O Thou Great Redeemer

Apparently this is also the Welsh Rugby Team theme